The PRIDE Study/PRIDEnet, University of California, San Francisco, San Francisco, California, United States of America.
Division of Nephrology, Department of Medicine, School of Medicine, University of California, San Francisco, San Francisco, California, United States of America.
PLoS One. 2019 May 2;14(5):e0216282. doi: 10.1371/journal.pone.0216282. eCollection 2019.
Historical and current stigmatizing and discriminatory experiences drive sexual and gender minority (SGM) people away from health care and clinical research. Being medically underserved, they face numerous disparities that make them vulnerable to poor health outcomes. Effective methods to engage and recruit SGM people into clinical research studies are needed.
To promote health equity and understand SGM health needs, we sought to design an online, national, longitudinal cohort study entitled The PRIDE (Population Research in Identity and Disparities for Equality) Study that enabled SGM people to safely participate, provide demographic and health data, and generate SGM health-related research ideas.
We developed an iPhone mobile application ("app") to engage and recruit SGM people to The PRIDE Study-Phase 1. Participants completed demographic and health surveys and joined in asynchronous discussions about SGM health-related topics important to them for future study.
The PRIDE Study-Phase 1 consented 18,099 participants. Of them, 16,394 provided data. More than 98% identified as a sexual minority, and more than 15% identified as a gender minority. The sample was diverse in terms of sexual orientation, gender identity, age, race, ethnicity, geographic location, education, and individual income. Participants completed 24,022 surveys, provided 3,544 health topics important to them, and cast 60,522 votes indicating their opinion of a particular health topic.
We developed an iPhone app that recruited SGM adults and collected demographic and health data for a new national online cohort study. Digital engagement features empowered participants to become committed stakeholders in the research development process. We believe this is the first time that a mobile app has been used to specifically engage and recruit large numbers of an underrepresented population for clinical research. Similar approaches may be successful, convenient, and cost-effective at engaging and recruiting other vulnerable populations into clinical research studies.
历史和当前的污名化和歧视经历使性少数群体和跨性别者(SGM)远离医疗保健和临床研究。由于医疗服务不足,他们面临着许多使他们易受健康状况不佳影响的差异。需要有效的方法来吸引和招募 SGM 人群参与临床研究。
为了促进健康公平,了解 SGM 的健康需求,我们设计了一个名为 PRIDE(身份和差异的人群研究以实现平等)的在线、全国性、纵向队列研究,使 SGM 人群能够安全参与,提供人口统计和健康数据,并提出与 SGM 健康相关的研究想法。
我们开发了一个 iPhone 移动应用程序(“应用程序”)来吸引和招募 SGM 人群参加 PRIDE 研究-第 1 阶段。参与者完成人口统计和健康调查,并参加关于对他们来说重要的 SGM 健康相关主题的异步讨论,以便未来的研究。
PRIDE 研究-第 1 阶段同意了 18099 名参与者。其中,16394 人提供了数据。超过 98%的人认为自己是性少数群体,超过 15%的人认为自己是性别少数群体。该样本在性取向、性别认同、年龄、种族、民族、地理位置、教育程度和个人收入方面具有多样性。参与者完成了 24022 项调查,提供了 3544 个对他们重要的健康主题,并投了 60522 票,表示他们对特定健康主题的看法。
我们开发了一个 iPhone 应用程序,招募了 SGM 成年人,并为一项新的全国在线队列研究收集了人口统计和健康数据。数字参与功能使参与者成为研究开发过程中的坚定利益相关者。我们相信,这是第一次使用移动应用程序专门吸引和招募大量代表性不足的人群参与临床研究。类似的方法可能在吸引和招募其他弱势群体参与临床研究方面取得成功、方便且具有成本效益。